Tuesday, July 7, 2015

Health Care and the UN Disability Rights Convention-The Lancet, 2009-Try 2

Health Care and the UN Disability Rights Convention-The Lancet, 2009



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Gilberto Rincón Gallardo, President of the National Council to Prevent Discrimination in Mexico, signs the UN Convention on the Rights of Persons with Disabilities, March 30, 2007
People with disabilities can be healthy.1 Yet too often they are excluded from general health care by numerous obstacles, including a lack of training of health professionals, physical inaccessibility, and communication barriers (such as a lack of sign-language interpretation).2 Moreover, individuals with disabilities lack coordinated care and are often excluded from health-outreach programmes.3 Disability-based exclusion is bolstered by a lack of awareness among policy makers about this minority group and their needs.

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Editorial
DOI: http://dx.doi.org/10.1016/S0140-6736(09)62043-2

Disability is no justification for murder

Disability is no justification for murder

Analysis
Posted
There are many stories of disabled people who have died at the hands of family members, and so often the media uses terms like 'compassionate homicide' or 'mercy killing' to describe the actions. But the killing of a disabled person is not 'compassionate'. It is not 'euthanasia'. It is murder, writes Stella Young.
I first heard the name Kyla Puhle in December last year. Hers wasn't an unfamiliar story. I'd heard dozens like it before.
Twenty-seven-year-old Kyla starved to death in her family home in South Australia. She weighed just 12 kilograms.
It's probably important to tell you, at this point, that Kyla was a disabled woman. Is it important? Does it change the story? It certainly doesn't change the fact that a young woman is dead, and that she probably died in horrible pain.
What it does change, it would seem, is the fate of those responsible.
Angela and Harry Puhle were originally charged with the murder of their daughter but released on bail. Harry Puhle later committed suicide, shooting himself with one of his registered firearms. This prompted a coronial inquiry into why he wasn't stripped of his guns when granted bail.
We might be forgiven for wondering why, if the Puhles owned firearms, they didn't just shoot their daughter instead of starving her to death. It would certainly have been a more humane and dignified death. The prosecution argued that Kyla was neglected over an extended period of time, and literally starved to death.
Angela Puhle pleaded guilty to a lesser charge of manslaughter and was sentenced to a three-year good behaviour bond. Further, the judge described Puhle as "a loving and devoted mother". He said:
"You did all you could over the years to ensure she could live as happy a life as possible for a person with severe disabilities that she suffered from."
She will not serve time in prison.
Consider for a moment the fact that in South Australia where Kyla Puhle died of starvation, the offense of ill treatment of an animal - whether or not that ill treatment results in death - carries a maximum penalty of $50,000 or four years in prison (PDF). Earlier this year Adelaide man Hally French pleaded guilty to bashing a dog with a pole and suspending it from a clothes line. He received a three month prison sentence. The dog subsequently made a full recovery.
Kyla Puhle was entirely dependent on her parents to care for her. She was unable to walk, talk or feed herself. We know that services and support for people with very high support needs like Kyla are few and far between. Part of the reason we know this is because tragedies like this continue to happen. The Puhle case is not an isolated one.
In July 2009, Beverley Eitzen drugged and stabbed her 16-year-old intellectually disabled son Peter to death. She was released on a mental health supervision licence and served no time in prison.
In November 2007, a seven-year-old autistic girl we know only as "Ebony" died of starvation in her family home. She was locked in a room with a boarded up window and died surrounded by her own waste. Her father served 16 years in prison, and her mother had her 30-year sentence reduced on appeal.
In August 2003, Daniela Dawes killed her 10-year-old autistic son Jason by clamping his nose and mouth shut with her hands until he died of suffocation. She pleaded guilty to manslaughter and was placed on a five-year good behaviour bond.
There are many more names I could give you of disabled people who have died at the hands of family members. Tracy Latimer. George Hodgins. Tom Inglis. Daniel Corby. Alex Spourdalakis. And many others.
In so many of these cases, judges have spoken of the enormous strain parents are under, caring for their disabled family members. However, while the disability support system may indeed be woefully inadequate to support these parents, it cannot possibly be used to justify murder.
The Puhles requested permanent care for Kyla in 2004 but a suitable spot was never found. They were eligible for 54 days of respite per year. They didn't always use them. There are many parents of disabled people under enormous strain, some with even less support than the Puhle family, who would never harm their children, either through neglect or direct action.
In reporting these cases the media uses terms like 'compassionate homicide', 'mercy killing' or 'euthanasia' to describe the actions of the perpetrators. The message is clear: killing a disabled person is different to killing a non-disabled one.
In a piece for feminist website XO Jane last month, disability activist s.e. smith writes:
"The media tells us that having a disabled child is hard and there are extenuating circumstances in these cases which must be considered before "judging" parents who murder their children. Disabled people, in this narrative, are burdens to be handled rather than human beings who deserve dignity and respect -- the assumption is that disabled people have no quality of life, and that it's better to be dead than disabled."
The killing of a disabled person is not 'compassionate'. It is not 'euthanasia'. It is murder. The fact that a mother who deliberately withholds food from her disabled child for a long enough period that her child starves to death is not only excused of her crime but praised for her loving and devoted parenting, should be of great concern to us all.
The purpose of our justice system is to reflect the values of our society, and to punish those who violate our standards. As disabled people, we should be able to live safe in the knowledge that we're just as protected by this system as anyone else. The case of Kyla Puhle is a disturbing reminder that this is not yet a reality.
Stella Young is the editor of ABC's Ramp Up website. View her full profile here.

Comments (105)

Comments for this story are closed, but you can still have your say.
  • JohnM:

    03 Sep 2013 8:44:37am
    I ponder...

    1 - If Kyla Puhle was born like this whether if Kyla Puhle's mother had known in advance she would have requested an abortion.

    2 - We are told that Kyla was "unable to walk, talk or feed herself" but nothing of her intellectual capabilities so the exact extent of her disabilities is unclear. There's always a difficulty with drawing lines in the sand but I ponder whose interests we are acting in when we keep severely intellectually disabled people alive. Are we doing it for them in the hope that some cure is found, are we doing it for ourselves to show what compassionate people we are, or are we doing it in fear of public disapproval?
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    • RayS:

      03 Sep 2013 10:21:39am
      JohnM,

      We keep disabled people alive for the same reasons we keep you alive.

      Yes, even when you are old and demented we will keep you alive.
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      • the yank:

        03 Sep 2013 11:02:25am
        Therein is the problem. There are people that don't want you or society to decide when one can end their life. And who says society has that right?

        If society is going to tell people when they are allowed to die then society has the responsibility to help those in such a situation.

        This becomes even more difficult when one has a disabled person to care for and there are not the resources to deal with all the problems.



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        • frangipani:

          03 Sep 2013 12:42:05pm
          @the yank: I don't have a problem with people deciding that their lives are no longer bearable and organising euthenasia for themselves. I do have a problem with people making that decision on behalf of someone else without their consent.
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        • MT_Syd:

          03 Sep 2013 1:09:47pm
          There are a few issues here:

          1. If a person is severely disabled are they able to give consent, and under the law do they have consent to give?

          2. If a disabled person does with to die, it is illegal for anyone to help them

          3. If the state refuses to fully support a disabled person why should that person's parents/grandparents/siblings be required to support them beyond the age of 18?


          It is clearly understandable that some people who may have been great parents do not have the mental or physical resources to continue to care for a disabled child forever

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        • LJ:

          03 Sep 2013 3:44:11pm
          If you allow people to determine when life is useful or not useful, you are starting down a slippery slope. The cheapening of human life you have some severe consequences in the future. Thirty years ago abortion was the big issue, so it was legalised in situations of rape, incest, life of mother in danger, and within the first 12 weeks of conception. Now it is almost unlimited. In fact in the US they terminating at 36,37 weeks.now we want to be able to kill sick people, albeit at their request. Then I can guarantee, the consent will go, then it will be old people with the rationale that you have had a good innings and it is becoming too expensive to keep you. Cheapening life is not what we should be doing.
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        • Sandy:

          03 Sep 2013 9:51:00pm
          LJ says, ?If you allow people to determine when life is useful or not useful, you are starting down a slippery slope. The cheapening of human life....? This statement implies that only God should be allowed to determine usefulness. It reminds me of the little Ogden Nash poem that goes, ?God in his wisdom created the fly, and then forgot to tell us why.? And why a supposedly all-loving, all-knowing, all-powerful god would create disabled people in the first place simply defies logic. God?s unnecessary cruelty really does cheapen life. He/She/It obviously doesn?t care.

          Of course It is people who determine that their god should determine when life is useful. And even god-fearing people have no problem determining when and how much life is useful when it comes to buying the goods and services of other people?s work. Generally speaking, the more useful we are perceived to be, the more we are paid.

          The marketplace is our default value system. Even though it is not based on knowledge of ourselves and our environment that is a couple thousand years out of date?as is religious dogma?our marketplace value system also has fatal flaws. The chief one is its narrow, short-term perspective. Who cares about a sustainable future when we can create more jobs and greater profits NOW.

          So where does this leave disabled people and their families? God doesn?t care about you.
          If you are more seriously disabled, the marketplace sees you as unproductive and not worthy of investment. That leaves government. With the baby boomers reaching old age, old-age disability concerns will be backed by a substantial number of votes. But those with non-age-related disabilities may lose out. And a generations war may start with young workers with young families protesting high taxes to pay for caring for the swelling ranks of pensioners.

          During the difficult times ahead, I hope we are guided by the ultimate aim of sustaining life forever.
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        • mick white:

          04 Sep 2013 8:14:37am
          This is "the theatre of the absurd". 30 years ago, Morris West told us "God doesn't care where we dip our wicks", now we are being told that God does not care about us at all.
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        • Pegaso:

          03 Sep 2013 8:48:48pm
          The biggest danger I think is that people may be influenced in making a decision for euthanasia by people, likely to be beneficiaries of that person's death.Independent Medical opinion must always be a part of the process.
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        • June Just:

          04 Sep 2013 7:11:34am
          The medical system is not a protection. Every time my severely disabled son goes to hospital his life is in mortal danger as within minutes of first being seen some doctor will ask about what efforts they should take to ensure treatment is provided. This will usually occur on a number of occasions as if the decision to take him to hospital isn't proof that he wants to live.
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      • JohnM:

        03 Sep 2013 11:09:19am
        You don't keep me alive; I do.

        How do you know that I want to be kept alive even if I have dementia? You don't. I don't. You'd be keeping me alive despite my wishes not to be alive. Your morals should overrule mine??
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        • Jimmy Necktie:

          03 Sep 2013 11:40:12am
          "You don't [know what I might want]"

          Exactly. It's not for us to decide who lives and who dies, who has 'quality' of life and who doesn't.
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        • frangipani:

          03 Sep 2013 12:45:05pm
          This isn't about someone deciding to end his or her life. It's about someone deciding to end another person's life. And we certainly do have rules about that. If we were to set up a framework and panels for making these decisions on sound medical and ethical grounds, fine, but when one person takes it upon himself to make the decision without consultation then I don't see that it's anything but murder.
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        • firthy:

          03 Sep 2013 1:21:14pm
          I think that is a reasonable comment. I would note this though - how does the doctor who provides morphine to a patient who is in terrible pain with a terminal disease treated when they either know, or suspect, that the dose will kill the patient? This happens regularly but the issue (of how to treat people in such circumstances) is shoved under the carpet because society at large is too squimish to face it. The underlying issue in this article (how do we treat people who have zero quality of life) also falls into this catagory. Now at no stage am I supporting the actions that were taken (a prison sentence should have applied here, at a minimum because of the manner chosen to end life) but the issue is one that our society should debate.
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        • Mycal:

          03 Sep 2013 7:06:53pm
          frangipani I am inclined to agree with you and I think it dangerous to confuse euthanasia with killing disabled persons. Informed consent is absolutely a prerequisite to euthanasia. However if we pass laws that:
          a) make it the responsibility of parents/relatives to care for the disabled, and
          b) make it murder to kill disabled people,
          then do we not have an obligation to support them both in their extremity?

          I am also concerned about the making of blanket rules here, we don't know the extent of the disability, we don't know the quality of life they or their carers had and such factors are mitigation. Finally actively killing a person (disabled or not) is one thing, withdrawing support is another. I am legally not my brothers keeper and while I may have a moral and ethical duty I cannot be compelled to care.

          All that said, why didn't the parents take Kyla Puhle to a public institution and just walk away?
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      • Hung One On:

        03 Sep 2013 11:17:30am
        Ray, what do mean by "when"?
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      • Gody:

        03 Sep 2013 12:01:41pm
        RayS - Being sentenced to death is as appalling as being sentenced to life.
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    • Brenda Nevill:

      03 Sep 2013 10:26:47am
      It is possible for people with severe disabilities to a lead happy life. If we were to access quality of life by the amount of laughing, smiling and positive human interactions then the four severely disabled people who live at my daughter's house have a much better lifestyle than many of my non disabled neighbors. While it might be said these are the "lucky" ones who have high quality full time care it must be mentioned that the Puhle's removed their daughter from day services,(and no one from this service asked questions?).
      While it is true that there is a shortage of services in South Australia is this an excuse for murder?
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  • whogoesthere:

    03 Sep 2013 8:59:05am
    Young has written a piece specifically about violence against people with disabilities. Now whenever someone writes specifically about violence against women there are a barrage of comments along the lines of : all violence is bad, men suffer more from violence than anyone, the author hates men (so this author hates able-bodies people), the author doesn't care about other victims of violence and so on.

    I wonder if Young will cop the same ?. Or maybe people will accept this is a valid topic that needs to be brought to all our attention in the hope that things may change.
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    • Adman:

      03 Sep 2013 9:49:12am
      False equivalence. The disabled truly are at a disadvantage in Australian society. The lack of resources for disabled people is disturbing. I could not know what it would be like to know you are going to spend the rest of your child's life feeding, bathing, cleaning them. Let alone what is going through the minds of those unable to communicate. Also, notot knowing what will happen when I am no longer able to care for them. The disabled are also much more likely to experience some kind of abuse than any other section of society.

      Why you have men and women complaining when there are articles that only focus on violence against women is because women are less likely to experience violence overall than men, and they all but ignore that 30% of victims of domestic violence are men. Most still don't believe that last fact, that is why people use forums such as this to educate others. Many articles also perpetuate the men bad, women good paradigm.
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      • whogoesthere:

        03 Sep 2013 10:30:09am
        I see no false equivalence at all. Most of us have some cause we feel more strongly about than others that are equally worthy. The fact that men may experience more violence is beside the point, it shouldn't be a numbers game. A person (male or female) should be able to speak about whatever issue concerns them the most without copping a barrage of verbal abuse.

        Violence against men, women, the disabled, children, the elderly, is all bad. Violence in the home is bad, random violence on the street is bad, instititionalised violence is bad, racial/cultural violence is bad. It is a huge issue. But the only people who are criticised for focussing on one aspect of violence, are those identified as man-hating feminists.
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        • Bev :

          03 Sep 2013 11:28:03am
          Feminists are criticized not because they speak out against violence against women but because they dismiss or attempt to minimize or pretend it doesn't exist other violence (particularly DV against men)
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        • Adman:

          03 Sep 2013 11:39:47am
          Your inability to see the false equivalence, does not mean it doesn't exist. The main example I gave is that disabled people are disadvantaged in Australian Society, women are not. Disabled people are more likely to suffer some form of abuse than any other section of society. Women much less so, less than most other groups. Disabled people are much less likely to be able to speak out or seek help for themselves, than any other group. It is accepted that abuse of disabled people knows no gender boundaries, nor does the gender of the disabled person matter.

          The paradigm in dealing with the abuse of the disabled, is one that it is the fault of society. The paradigm when dealing with the abuse of women, is that it is seen as the fault of men. That is the difference.
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        • bill:

          03 Sep 2013 11:46:32am
          "Violence against men, women, the disabled, children, the elderly, is all bad. "

          and yet there are no Govt support structures for male victims of violence. no advertisements telling us how 'Australia says no to male violence', no halfway houses, in almost all cases the police will arrest the male in a domestic, and the only major awareness campaign we have (white ribbon) is about female violence. and ironically created by men.

          we wont hold our breath waiting for the reciprical campaign by women about the much large numbers of men being assaulted, or the very large minority of males that are now subject to violence by women.

          so false equivalence indeed.
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        • whogoesthere:

          03 Sep 2013 1:17:13pm
          'there are no Govt support structures for male victims of violence'

          Absolutely. And whose fault is that ?. Most politicians are still men !. So instead of blaming the politicians you blame those horrible feminists ?. What power they must have.

          Men do not campaign on there own behalf enough, like they don't go to the doctor enough, or seek help for mental health issues etc. It's the macho thing, unfortunately.
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        • Bev:

          03 Sep 2013 6:32:20pm
          I make it my business to look at who is on the government advisory committees and who makes submissions and the content of those submissions. The fact that there is no support for men and their children who are subject to abuse is very very deliberate. The same people are on the committees state and federal and the same feminist organizations are at the for front of shaping DV policy and legislation. For years they have been effective in denying and support for men. By the way it is not a macho thing men I talk to are absolutely frustrated that their story is blocked at every turn. A man's health policy, that's an oxymoron and a very deliberate one engineered by feminists. By the way any polie who goes against the feminist line will be subject to an orchestrated campaign calling him myogenic, doesn't care about women etc, etc, etc.
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        • Miowarra:

          03 Sep 2013 12:01:49pm
          whogoesthere insisted "...I see no false equivalence at all...."

          That's only an admission of your own failure to recognise facts.

          The set of "all women" is not so disadvantaged in Australian society as the set of "all disabled" That's why it is false to claim an equivalence between the two sets.

          Alert moderator
        • whogoesthere:

          03 Sep 2013 1:12:19pm
          It could equally be said that you and others see no equivalence is an admission of your own failure. We'll have to agree to disagree. And it's splitting hairs anyway.

          Regardless, it should not be a contest about 'who is more disadvantged'. By your criteria the set of 'all men' in Australia are not as disadvantaged as 'all disabled' (or pretty much any other group). So we shouldn't talk about violence against men then ?.

          As I said, it should not be a contest. Simply, if a man or woman wish to speak about a topic that has special significance to them, they should be able to do so without the personal attacks that usually follow.

          Young is a disability activist, she works to improve the life of disabled people, it does not follow that she does not care about male DV (for example). It also does not follow that women who speak for battered women (for example) don't care about men either. Probably some do 'hate men', but not all of them do, and it is a classic example of playing the 'man' not the ball.

          I have a female friend who suffered terrible abuse from an ex-husband. Now she works with other female victims. She has been called a 'man hating lesbian' (among other things) when speaking about female DV. It's not right, it's just not right. (She is actually happily married to a wonderful man, not that that should matter).
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        • Bev:

          03 Sep 2013 1:43:08pm
          I repeat nobody should be stopped from speaking. What should not be allowed is the attempt to downgrade, dismiss or drown out the message from others. Feminists are guilty of all of the above when it comes to violence against not only men but any other group besides a sub group of women.
          Alert moderator
        • whogoesthere:

          03 Sep 2013 2:33:25pm
          Then maybe our only quibble is the definition of a word. I think tarring all who would them call themselves a 'feminist' with the same brush is incorrect. All movements have their extreme fringe, they can be dismissed without dismissing the entire cause.

          My friend calls herself a feminist. To her that simply means women are not second class citizens. She does not try to downgrade, dismiss, or drown out the message of anyone else, just promotes her own. Just like Stella Young does.
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        • Jimbob:

          03 Sep 2013 4:22:42pm
          Pot meet kettle. I've never once seen feminist-hater commenters condemn violence against women, it is a blatant attempt attempt to downgrade, dismiss or drown out the message from others.
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        • Adman:

          03 Sep 2013 3:22:07pm
          Firstly, I have not seen any person on this forum attack people that speak out against violence against women. What I have seen is people that speak out against the paradigm that women are victims and men are perpetrators. They do this by stating that men can also be victims.

          Secondly, I have given reasons for why I consider your initial comment as a false equivilence, your response was 'I don't agree.', you have not said why.

          Thirdly, everyone has the right to speak out about something that they care about, we agree on this. It seems to you, however, that when it comes to comments, people don't also have the right to point to the bigger picture. If you wish so badly to control and restrict the narrative, don't post to a public forum.

          Finally, we all have anecdotes to share regarding the wrongs done to people we know. I have a friend who was beaten frequently by his girlfriend. She used various household objects and threw things. When trying to get help he was laughed at due to the fact he was 6,3" and solid. 2 years ago he committed suicide. You see, this is why I care about getting the message that men can also be victims out there. The message that women are the victims and men are violent is harmful to people like him.
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        • whogoesthere:

          03 Sep 2013 10:03:18pm
          'everyone has the right to speak out about something that they care about'

          Yes, we do agree. That is the point my original post was making.
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        • firthy:

          03 Sep 2013 1:39:13pm
          I can't speak for others but I have taken offence at certain articles because they have appeared to smear all men with the same brush (or all of society). Indeed I recall reading one article that stated "this is how society treats women". Now I took offence to that as I see myself as part of society and I certainly don't treat women in the way set out in the article. The author of that article does seem to come from a bias of "men = bad" though. On the other hand I have read articles on the topic that have been well presented even though they were confronting - the article on the murdered prostitutes in Melbourne comes to mind.
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    • Bev:

      03 Sep 2013 10:02:50am
      There are similarities between what you talk about and this. If only the father had been involved do you think he would be walking the streets? Not on your Nellie he probably would have been pilloried in the media as a monster and got a 15 to 20 year jail sentence. The real story here is on average women receive less than half the sentence that a man would for the same crime. We as a society bend over backwards to make excuses for crimes women commit. This despite the fact that women murder children at twice the rate of fathers and commit over 70% of physical abuse and neglect of children.
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      • Hung One On:

        03 Sep 2013 11:24:21am
        True Bev. I recently read an article about people who text or use a mobile phone while driving and causing death or horrific injuries to innocent motorists. All the women got suspended sentences while almost all the men went to jail.
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  • stormgirl1960:

    03 Sep 2013 9:10:01am
    It is a great indictment of our society that parents feel so desperate and isolated that they can resort to killing their own child because they can't cope with the child's disability. Greater support services and access to respite care is obviously needed. As you say Stella, most parents are loving and caring, and don't feel the need to murder their child.
    Perhaps some people view it as not wanting to see the child suffer any longer, however the manner of the death often creates greater suffering, not only for the person who dies, but also for the family and the wider community.
    Many of the stories you related are horrific and brought me to tears. I weep not only for those who died, but also for Australian society today, which seems to have become much less caring than it once was, and more willing to turn a blind eye to those in need.
    Well written, Stella.
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    • Peter the Lawyer:

      03 Sep 2013 10:19:44am
      I agree that it is an indictment of our SOCIETY. We should have 100s of support charities and organisations out there to help diabled people. But of course we don't have enough because we have blithely become so non-compassionate through letting government take over all areas of welfare.
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      • JohnM:

        03 Sep 2013 11:11:37am
        So you would spend an infinite amount of money on these services to the detriment of other people who would be forced to miss out on services for them?

        No, I'm not rabidly opposed to your thinking. I'm merely trying to point out that there's a balance that needs to be struck between the wants/needs of different people.
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        • wandererfromoz:

          03 Sep 2013 11:53:26am
          Of course there has to be a balance John but StormGirl makes very good points not addressed by a sometimes unthinking not caring mass - but when I see a government spending over a billion dollars or more on a sports stadium for a particular sport enjoyed by a minority (who if the rule of 'user pays' is applied fairly then they should only be the one's paying) and yet see homeless slumped in the streets, as do tourists see from overseas and interstate and comment on it, then my blood boils.

          If there is a 'God' and He is a God of Justice and Mercy then His blood must boil also - we have the responsibility to first of all care for those who cannot care for themselves and to assist others caring for them - even before billions spent on 'war', billions spent on so called very necessary infrastructure for the very few who again if the user pay principle were to apply should pay for that infrastructure themselves on the way to becoming wealthy, and of course for billions wasted for which this government is going to pay a very high price. The universals priorities are so often vastly different to our own but it is by the Universal we will be judged. But perhaps without the same mercy judges must use when deciding on extremely difficult cases - I am so relieved I do not have skills or wisdom to make such judgements and like StormGirl I weep for all, as well as rage against the injustices that can be ascribed to all in society, in cases this article discusses.
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      • bill:

        03 Sep 2013 11:49:06am
        I wasnt aware the Govt had mandated themselves to be the only providers of support. can your lawyerness show me where that happened?

        and presumably you are using that as a predictable call to wind back Govt welfare, despite the fact that countries with lower social spending (such as the US) have vastly worse social outcomes and even have lower amounts that each person donates to charity.

        so its an indictment on the callousness of society apparently, but you rail against the one thing which stops us being worse.
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        • firthy:

          03 Sep 2013 1:43:37pm
          The poster never stated that the government has mandated this. The point being made is that many of us simply leave such work up to the government on the basis that "I pay my taxes so why should I pay anymore." I must admit I fall into that basket to a large extent - although I do make a small monthly donation to a charity. Something I guess but not much.
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    • wandererfromoz:

      03 Sep 2013 10:20:10am
      I agree with you -whenever I 'trip' over a homeless, obviously very disturbed person in the public street and in my own pathetic way do all I can to give and have helped I too reflect on the state of our society as a whole. And of course the extremely intellectually and physically disabled. It has been asked of me again and again "Why does God allow this to happen?" (On the assumption that if He is all powerful then ipso facto He can 'fix it'- this comment is not disrespectful to those who do not believe) And by the way I enjoy the para olympics more than the able bodied - weep we all can at their amazing courage, faith and perseverance - we the relatively able bodied have nothing to complain of.

      Well if there is a 'god' then I suspect that He expects us to 'fix it' - of course in the past and in some cultures it is 'fixed' - whether it be by imprisonment and forced labour, murder, genocide etc. But for you and me I think that if there is a 'god' then it is a test - what do we value the most - Goods as our 'god' - or service to others because there is a 'god'? Of course attention to these issues all related means incredible sacrifice to those who can, who need to 'give' more by way or money etc. The NDIS is a good start but I was startled that the medicare levy was only increased by one half percent which when we need a dental service also funded under medicare should have been doubled to 3.00% -but what would the reaction of the worshiping Goods and Services mob be to such a proposition?

      Murder is the most heinous crime of all however you call it - but the God I worship also argues the case for Mercy - and Has said 'Justice without mercy is no justice at all' - I therefore leave it up to the judges who must quiver with fear as they judge these cases and desperately hope all would understand why the sentence they chose to give was given - given the attitude and state of our society to the intellectually and physically disabled let alone the homeless - by the way think of this "He who is without sin let him cast the first stone".

      It is these sorts of thought provoking articles we should see more of it we truly are a caring people of a caring nation - thank you.
      Alert moderator
  • Kim:

    03 Sep 2013 9:16:14am
    QUOTE: "However, while the disability support system may indeed be woefully inadequate to support these parents, it cannot possibly be used to justify murder."

    No, it shouldn't be. But the very fact that disability support IS so woeful, must be a contributing factor since, as you point out, there are many cases of parents harming and even killing their disabled children. I always like reading your articles, Stella, and there are times I agree with you 100%. In basic terms, I agree with your article here too: Murder is murder and it shouldn't matter if that person is disabled or not.

    HOWEVER, I don't agree with your detailed arguments and oftentimes I find your attitude frustrating. Like you, I have a disability. But I would never presume to know what it's like to parent children with disabilities, particularly severe ones. I would never presume to speak for all those who have disabilities as everyone's experiences are different. Sometimes I feel in your writing that it's as if you do feel that you can speak on behalf of the entire disabled community, and you simply do not. It reads, sometimes, as if you see the world in black and white, and frankly, it's just not like that.

    There are many shades of grey, and in cases where parents have harmed and/or killed their disabled children, there must be many many reasons and some of them may be senseless, but we should not simply ignore the fact that many parents of disabled children are stressed, angry, frustrated, sad, mad and barely coping. So how can you still say that given those factors, we should not examine the disability support system and its role in these kind of tragic cases?
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    • Ash:

      03 Sep 2013 10:03:00am
      Kim,
      I liked reading your comment. I agree with your logic on the argument. You are right murder is murder, however in all cases the context of a murder is considered by a judge, many many times I do not agree with the lenient sentences given to rapists and murderers and people who harm children. However the judge must always consider context and try and find 'justice' - this is harder from the outside as we don't always have all the facts when we hear the results in the news. We also have our inherent bias' whereas the judge is required to put these aside.

      It's quite easy to jump to conclusions on the basis of what is reported and want to lock people away for the maximum sentence, it is much harder to sit and find a judgement that punishes the perpetrator but also considers their background and circumstances. I don't envy judges in their roles.

      Violence against the disabled is abhorrent and never will be anything less than abhorrent. Perhaps as Kim said though, there needs to be an examination of the disbility support services to try and determine when support or intervention could have helped the victims, and how to ensure future tragedies such as this do not happen.
      Alert moderator
    • Adrian:

      03 Sep 2013 10:21:04am
      I think that is exactly Stella's point. If I murdered someone in full knowledge there wouldn't be a shade of grey for me, yet under your conviction the fact of their disability brings about a 'shade of grey'.

      Murder = murder. Doesn't matter if the victim is:
      Disabled
      Female
      Muslim
      ...
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      • whogoesthere:

        03 Sep 2013 1:21:00pm
        Of course there are shades of grey. Life is full of them. Consider, someone walking down the street is killed by someone for 'a bit of fun'. Or someone who has been severely abused by their partner for years, and finally 'snaps'. Life would be simple if it was black and white, most of the time it isn't.
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      • Kate:

        03 Sep 2013 1:23:33pm
        Yes there would. It's why we don't have mandatory sentencing. The judge wuld look at what you did, how you did it, why you said you did it, what you'd done/hadn't done previously and then sentence you.
        Lots of grey there.
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      • Jimmy Necktie:

        03 Sep 2013 2:13:18pm
        well actually murder does not equal murder.

        There's involuntary manslaughter, manslaughter, homicide, 2nd degree murder, 1st degree murder...

        apologies if I haven't got it quite right but you get the point - there are all manner of degrees
        Alert moderator
    • Possum:

      03 Sep 2013 10:30:00am
      Kim:

      Thankyou for your insightful comment.

      I find this article na?ve and angering to the point where it seems the author meant it to be so!

      The family in this article were denied placement of their daughter for a start. The father committed suicide. They just couldn't cope. It is no secret that community services in many areas - disability, aged care, support of sole parents - are in a state of criminality. We let our aged die in their own waste!

      If these crimes occur in 'caring' institutions like they do, who is anyone to judge this mother.

      I have been a mother for 20yrs; a sole parent for 17yrs; the carer of my own late mother for 10yrs.

      During this time I had a cancer scare, major exploratory surgery which has left me incapacitated and in chronic pain.

      With no extended family to help and with friends turning a blind eye, somehow I've survived so far. I have trouble getting the medical profession to acknowledge I am incapacitated because they can't SEE it when I'm sitting in the surgery.

      If my child had been disabled I surely would have lost them one way or another. I was lucky enough to have my own income from superannuation as an ex-professional.

      I have been categorically abused by many community services in attempts for assistance. There is NO HELP OUT THERE!!

      Stella appears to have no idea at all about the biological bond between a mother and child. A mother would die for their child if they had to. The woman in this article does NOT need 'bashing up.'

      There is more to this story than meets the eye!!!!!!!!

      Alert moderator
      • din:

        03 Sep 2013 11:06:27am
        FYI, some mothers treat their child very poorly.

        its not correct to say that all mothers would die for their child.


        Stella appears to have no idea at all about the biological bond between a mother and child. A mother would die for their child if they had to
        Alert moderator
        • Possum:

          03 Sep 2013 12:05:12pm
          FYI - din

          I did not say that ALL would die for their child.

          The maternal instinct is extremely powerful. If that biological connection is disturbed then some mothers will behave badly, unlike a mother.

          This is a biological fact. There are many scenarios that result in this disconnect. One prolific example is domestic violence. This is one example only.

          It's hard to breastfeed when the father of the child is abusing the mother for example. A mother cannot just stop breastfeeding if this occurs without undergoing extreme pain to herself and the baby. Domestic violence to the mother during breastfeeding is one example that may bring this disconnect if the mother cannot remove herself from the perpetrator.

          Once again, this is one example so try not to start up an argument about domestic violence; like explaining to me how men can be subject to violence by women. This is what might happen in the case of your attitude.

          Alert moderator
        • Huboo:

          03 Sep 2013 12:06:33pm
          As the father of a difficult to manage 6yo who can't walk, talk, eat, or communicate his needs very well, I can suggest that the parental bonds to our children make us want nothing more than the best for them. It is a very extreme statement to say a parent would die for a child and is rarely proven to be the case, but I can say that we definitely sacrifice our lives - wants, desires, aspirations, identity??? - from the time we decide to care for our disabled children. Who you are quickly gives way to being little more than the carer of your child for potentially the term of your natural life.

          As an aside now I am here, I too find that Stella Young adopts a holier than thou attitude on issues of the disabled. Some of her comments are just as insensitive (in the context of my family) as the local yob calling my son a 'retard', 'spaz', whatever, yet (personally) that much more offensive because she does claim, through experience?, to be so much better. It would be nice if Stella young herself could demonstrate a little more empathy with the community of disabled and able-bodied people around her, rather than expecting us to re-design the world for her.
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        • MT_Syd:

          03 Sep 2013 1:16:10pm
          hopefully you will be able to maintain your desire to care for your child when they are 40 years old and you are 70 or 80

          It is easy to understand that caring parents get worn down, depressed, and resentful over decades, and can get to a mental state where they might be willing to kill
          Alert moderator
    • qxeau:

      03 Sep 2013 10:51:16am
      What a great comment, Kim. Thank you.

      What we do not need is commentators like Stella telling us that they represent the whole view of disabled people and that the rest of us who hold a different view are evil.

      Stella also disregards the role of judges trying to balance all circumstances in determining a verdict. Not an easy job.

      Sadly, based upon previous articles, I doubt Stella can see past the nose on her face to recognise this at all. Stella's credibility is completely lost on me.
      Alert moderator
    • Bab:

      03 Sep 2013 11:21:23am
      I had absolutely no idea what it was like to have a severely autistic child until I visited a friend of a friend whose son is now sixteen. He is level 6 autistic, and a big lad. He is also starting to act out sexually which is understanding given his age, but it is an additional strain for the people around him.

      His dad now has to stay home from work with mum, as he is now too big and too strong for her to control. At one stage when I was there, he did have a bit of a tantrum and I got a bit of wrestling practice. It was a novel experience for me, but the notion of having to do that day in day out for the rest of my life is unthinkable. I feel for these parents, I really do.
      Alert moderator
      • Patrice C.:

        03 Sep 2013 4:58:05pm
        Dear Bab - If only I could help you, and other people in your situation.Imagine that a Stat run organisation receives $128.000 p.a. while the mother of a disabled child only gets $66.00 p.w. + 5 hours respite for shopping. How could a government even contemplate to open the doors to more than 15,000 refugees p.a., how could a government even contemplate putting a system in place whereby a wealthy woman receives $75,000.000 for six months to bring up her own child, disabled or healthy. It is difficult not to despair at our various party's priorities. HELP - HELP!
        Alert moderator
  • Heretic:

    03 Sep 2013 10:05:36am
    Stella Young's argument is entirely valid - humanity must never use a double standard to judge the violent or negligent ending of another person's life.

    However, I can understand all three points raised by"ij", "JohnM" and "whogoesthere" as well.

    ij's argument: Though no excuse for murder, I see no compassion in a society that refuses to take over the caring role on behalf of parents who, for whatever reasons, are unable or unwilling to raise their disabled children or adults unable to look after another disabled adult. Who are we to dictate that one person must sacrifice a life yet to be fully lived for another? In caring for the aged and infirm, we've accepted that we can no longer put this big burden upon the next generation's women to take care of alone. Why are we not sharing the burden of caring for the disabled where required?

    JohnM put his finger on a tabu - eugenic abortion. Is is right for a society not willing to fund an alternative to make any judgement here? Should we introduce a form of national disability carer service to share the burden?

    I'll wager that a certain proportion of carers for the disabled are locked into their carer's role due to guilt or fear of judgment, as John suggests. Is it more of a "sin" to hand over the caring role to society than to continue to live a lie and fail to fulfil your own life's full potential?

    Whogoesthere is spot on in his analysis that this topic - violence against the disabled - will not draw out many comments, let alone comments unfavourably comparing this injustice to injustice against other sections of society. Why? For the same reasons that JohnM has talked about. Fear of judgment and touching on one of society's major tabus. So, whogoesthere is right, "this is a valid topic that needs to be brought to all our attention in the hope that things may change."

    The questions are which aspects of this topic will change? Will we, at last, look into the causes for the rising proportion of babies born with disabilities in the hope of reducing the incidence? Will we ensure that the burden of caring for these children is justly shared and that a way of life is created and funded that brings joy and permits the full scope of living life according to the individual's potential for both the disabled person and the carers?
    Alert moderator
    • Dean:

      03 Sep 2013 11:18:38am
      "Will we, at last, look into the causes for the rising proportion of babies born with disabilities in the hope of reducing the incidence?"

      Ask anyone working with the disadvantaged, and they will all be able to give you examples of entire families with varying levels of disability. Here is where we run into ethical problems. Parents with disabilities are more likely to have children with disabilities. The problem is compounded when the parents have mental or psychological problems as well, and most of the examples that Stella has included involve parents who were arguably never fit to be parents in the first place. Any attempt to reduce the incidence of people being born with disabilities that avoids looking at parental genetics and substance use is tinkering around the edges, but to do so violates human rights. I don't have a good answer, maby there isn't one, but I don't think that Stella would approve of disabled people being encouraged to have fewer children.
      Alert moderator
      • Heretic:

        03 Sep 2013 12:34:32pm
        Dean:

        It took a long while before orthodox medicine acknowledged that adequate folate in the diet or supplements could dramatically reduce neural tube defects in the newborn.

        Now iodine is beginning to be recognised as being able to prevent various birth defects, including significant neurocognitive deficits, stunted growth, as well as speech and hearing problems.

        These are some of the preventative measures I'm talking about which would be all too easy to address in order to prevent the high number of birth defects and levels of disability in our population.

        Of course, toxic exposures, including alcoholism during pregnancy, would be another area to look into.

        If you search the literature, most health problems are not due to genetics but, rather, due to our environment and behaviours.
        Alert moderator
  • Patty:

    03 Sep 2013 10:16:33am
    Over the last 30 or so years our well-meaning society has progressively closed down accommodation and support services for people of all ages with severe disabilities, leaving family members exhausted and burned out with trying to care for them year after year after year.

    Often a person with severe disabilities falls between services, particularly when they reach adulthood, e.g., a man in his 30's I know who, through an accident, lost both legs, suffered other physical injuries including severe head injury leaving him unable to fend for himself physically or intellectually. This on top of existing severe mental illness. Disability services don't want to know - he is too old for their services and his intellectual disability was acquired in adulthood and he has significant mental health issues; mental health services don't want to know - they push him back toward disability services saying that is the more appropriate agency for him because of his physical injuries. It's like watching a macabre tennis match. Accommodation facilities for people with physical disabilities don't want him because he has acquired brain injury and mental health issues making him difficult to manage. He remains with his increasingly desperate ageing mother who puts up with his unreasonable and difficult behaviour (which he can't help), looking after his physical needs and frequently copping verbal and physical violence when he gets frustrated with the world. Yes, I can see how some parents get to the stage that Kyla's did and when you're that exhausted and out of options sometimes the problem-solving used looks irrational to those of us on the outside.
    Alert moderator
    • mum:

      03 Sep 2013 7:02:47pm
      Nobody can understand how exhausting it is to live like that. How depressing, hopeless and future-less it can seem if the person with a disability has a difficult or violent personality. Why do we have so little concrete sympathy for the carers of extremely disabled or mentally ill people? We prefer to look away and pretend it doesn't exist ( a little like the old attitude to disability itself) or make platitudes about what wonderful people they are then go on with our carefree lives. In a way, a parent for whom the care of a dependent never ends is just as disabled as the person they care for. I'm sure every case is different. I could never judge somebody else because I know how, long dark and soul destroying it can be. You have to pull out love from nowhere and keep it coming to survive. I can't imagine how you would survive if you ran out of it from sheer exhaustion. Maybe suicidal? Murder is often the next step from suicide when there is nowhere else to go. I think It's important to remember that carers are just as much human, and just as important, as the people they care for.
      Alert moderator
  • Albert:

    03 Sep 2013 10:18:03am
    The only sensible reason for putting people in prison is to protect society for the period they are in prison. But very few of the parents mentioned here are likely to offend again, so a prison sentence is pointless.

    This does not mean we condone their actions, rather that we need some other means of avoiding this type of murder.

    Alert moderator
    • din:

      03 Sep 2013 10:53:26am
      thats not quite true. prison is also used as punishment by taking away someone's civil liberites. It reinforces the notion that what someone did was wrong.

      if protecting society was the only sensible reason for prison, there are other options available.

      but i do agree that prison is not always the best option when one person either does, or doesnt do, something that causes another person to die.

      Alert moderator
    • Bev:

      03 Sep 2013 11:05:14am
      While I partially agree with what you say there is the deterrent factor to consider. How effective a deterrent locking people up is I don't know but there must be some effect.
      Alert moderator
      • Albert:

        03 Sep 2013 2:02:51pm
        The deterrent factor is known to be minimal. Not many people consider the length of a possible sentence they might get in these cases. In the situations described here the parents are totally distraught and not thinking clearly about consequences.

        And lets not go into rehabilitation. The chances of that happening in prison are negligible.
        Alert moderator
  • Ceelly:

    03 Sep 2013 10:19:14am
    I can understand Stella Young rage but as a parent of a disable child I can understand the plight of the parents. The real issue here is the parents had the responsibility of caring for serverly disable children and could not cope. Stella has failed to examined that at all. She has accepted that parents are responsible 'simple' and when they do something wrong because they can't cope all she say is they are BAD. That is not going to solve anything. To solve the problem what needs to happen is to not put people in a impossible situation they can't cope with. Instead of being purer than thou afterwards the inevitable consequences. I wish Stella Young was more pro-active than re-active.
    Alert moderator
    • Catsidhe:

      03 Sep 2013 11:54:15am
      "do something wrong"

      Nice weasel words. Say it like you mean it: "they aren't bad people just because they premeditatedly murdered their children."
      Alert moderator
      • Ceelly:

        03 Sep 2013 2:42:54pm
        No just sick to death of do gooders. Who do nothing just sit on their high horse and judge. Your ilk are worse than the poor sods who break. There is a real bad situation and that sort of judgement attitude isn't going to help at all.
        Alert moderator
        • Catsidhe:

          03 Sep 2013 10:47:11pm
          So thinking that it's wrong to starve someone to death, thinking that it's wrong to murder someone for something not their fault, that is "do gooding".

          Exactly how disabled does someone have to be before they don't count as human for the purpose of whether or not deliberately killing them counts as murder?
          Alert moderator
  • Hells Granny2:

    03 Sep 2013 10:34:03am
    Like a dirty stain on humanity Australia is bottom of the OECD countries in decent treatment of the disabled.

    Often treated as if we are in an Apartheid country. Our voices easily crushed, pushed aside and our people abused. Told to suck up what others would never contemplate.

    We have a Premises Building Standard 2011 that works against us to purposely exclude us from buildings, sporting, recreation facilities, public transport.

    Our Human Rights mediation only process is the lowest/weakest in the world and is prohibitive (on purpose ?)to stop complaints. Our Australian Human Rights cannot enforce their own Disability Discrimination Act 1992.

    How arrogant are they, who never think their next car ride away could bring a disability ? Age waits for no one and is your fate too...
    Alert moderator
  • Maddy Jones:

    03 Sep 2013 10:55:21am
    There is no way Kyla's death can be considered "euthanasia".

    Euthanasia means a good death, one that is quick, without pain. Starving to death over months can never be anything but painful and difficult.

    The question of sentencing for such a crime is a difficult thing for a magistrate. Balancing the questions of punishment, rehabilitation and deterrent can never be easy but much be particularly complex in these cases where reoffending is highly unlikely.
    Alert moderator
  • a1000miles:

    03 Sep 2013 10:57:24am
    As a mother of a 23 year old profoundly disabled son who is 100% dependent on others for his care, I have something else to add to the conversation.

    My son was nearly killed in January 2013 because his hypoglycaemia was not managed (i.e. he wasn't adequately fed) at his supported accommodation house.

    If my son had died in his supported accommodation house that day, the carers would not have been charged with murder. They would have (possibly) been charged with neglect.

    I had to bring him home to live with me again. I am 53 years old, recovering from cancer and suffering from anxiety and depression and have absolutely NO idea how to pay my mortgage as I had to give up my job.

    The government paid the organisation $128,000 a year to inadequately look after my gorgeous and funny son.

    As his mother, I now get $60 a week (and 5 hours respite - just long enough to do the groceries and other errands without the wheelchair).

    I have no wheelchair car so we are housebound unless it's sunny.

    Stress, anxiety and depression are endemic in people like me.

    Stella - with all due respect - even as a disabled person who is capable of looking after yourself to a great degree - you do not have the experience or understanding of the reality of caring 24/7 for someone with a profound disability.

    I agree - murder is murder - no matter who is the victim.

    But for goodness sake, sometimes it is a case of "there but for the grace ..".

    The Disability Services system in this country is broken - and unfortunately, even the NDIS is not going to fix it.

    Alert moderator
    • din:

      03 Sep 2013 11:42:38am
      someone made a comment about we dont have the money to care for everyone.

      I reckon we do, but we dont spend it wisely.

      in this example, the goverment has the money to pay the organisation 128k a year to look after a person

      but its only going to pay a carer a bit over 3k to look after the same person.


      which is why i reckon NDIS will do wonders if it can get the money it needs, and its a pity it wont go fully live till 2018/2019.

      Alert moderator
    • Ralph:

      03 Sep 2013 12:38:33pm
      Your comment that the facility that nearly killed your child gets $128.000 a year to inadequately look after him and you get $3.000 a year is a big part of the problem.

      But that is also the problem with Foster care etc. Foster carers get up to $1.200 a week to care for a child when an extra $100 a week to the parents could have avoided the need for foster care in the first place.

      It seems that no good assistance is available to parents/partners until it is too late.

      Your son may outlive you, and then he will be placed back in the same sort of facility where the same thing will happen again. Sadly, you will not be there to rescue him then.
      Alert moderator
    • anote:

      03 Sep 2013 1:56:22pm
      It is generally unrecognised that on occasion, the carer can suffer more than cared because of the demands of caring.
      Alert moderator
      • leafygreen:

        03 Sep 2013 2:51:26pm
        And sometimes those carers break, and cross the line.

        I don't recall either of the SA mothers that made the news being triumphant and smiling when they left court having 'breaten the rap', unlike bikie associates and killer drink drivers who give society the finger. I recall harrowed and sad women.

        I have to trust that the courts know the difference when applying penalties.

        Alert moderator
  • What's that:

    03 Sep 2013 11:16:57am
    Written by someone who has never had to look after a profoundly disabled person, not that I advocate for parents killing their family members but there are huge issues that the writer has not taken into account.
    Alert moderator
  • Catherine:

    03 Sep 2013 11:27:31am
    How does a so called "loving and devoted mother" starve her child to death? Find it absolutely gobsmacking that she pleaded guilty to manslaughter yet will spend no time in jail. What's wrong with our system.
    Alert moderator
    • Bev:

      03 Sep 2013 1:16:18pm
      She is a woman. We as a society don't want to lock up or punish women. See my comment above.
      Alert moderator
      • Kate:

        03 Sep 2013 2:12:26pm
        Yawn, Bev. Try having a look at some actual evidence. Look at the case above with Ebony. The only case up there where both parents were sentenced - Mother 30 years, Father 16 years.
        Ebony died of starvation. Neither parent fed her. But the judges looked at the entire situation ie the mental health and addiction problems and sentenced the mother to twice as long. Can you explain that one for me?
        Alert moderator
  • PaulD:

    03 Sep 2013 11:46:58am
    These issues all tend to boil down to the same conundrum:

    As individuals, we demand our liberties, freedoms and privacy.

    When something like this happens, we blame the State for not seeing into their crystal ball that these particular individuals were going to abuse their liberties, freedoms and privacy. "Why didn't [fill in the blank] do something to prevent this?"
    Alert moderator
  • anote:

    03 Sep 2013 11:48:18am
    I fully support the use of murder when other euphemistic terms are used to avoid that reality.

    I fully support the comparison with animals when it is clear animals are treated better.

    I also fully support euthanasia.

    "The message is clear: killing a disabled person is different to killing a non-disabled one." Depending on the circumstances, whether it should be criminal and if so the extent to which it should be punished, it can be different.

    I am especially disdainful of prolife, anti-euthanasia proponents who do little to back up their words with supportive action. A huge proportion of them are probably 'Christians'. Young has her special circumstances to be excluded form that strong criticism.
    Alert moderator
  • graham:

    03 Sep 2013 11:48:41am
    Stella,
    please name and shame the judges who make these judgements. Even in your article they can hide behind the legal system. Who will judge the judges?
    Your article will be even more interesting if it turns out that a particular cohort of judges tends towards sympathising with killers of disabled dependants.
    Alert moderator
    • PaulD:

      03 Sep 2013 1:17:14pm
      Graham,

      Before you make such comments publicly, you should spend some time watching Judges sentence people who commit serious offences.

      All courts are open to the public, justice is conducted publicly in this country.

      Better still, obtain a transcript of the sentencing process in this particular case.

      Researchers have found that people like you, when presented with all the information provided to the sentencing judge, would generally sentence offenders more leniently than judges.
      Alert moderator
  • Tom Martyr:

    03 Sep 2013 11:49:19am
    Is there a specific term for this apparent regular occurence?.. parental homicide perhaps? The media has their terms as the author indicates but it is difficult to label this sort of tragedy.

    I can see that the birth of a child should be a happy event filled with images of kicking the footy with your little boy or having tea parties with your little girl. If the reality turns out to be a miserable existence, a burden. The question in the judicial system has to be if this can justify termination and can the termination ever be claimed to be purely out of love?

    I personally think the human condition is pre-conditioned to think irrationally and act in self interest when dragged down beyond their tether. This doesn't negate the act like temporary insanity may, but even the parents who feel hope for happiness for all involved is dead are not thinking rationally. If they are sincere in their irrational hopeless belief then the terms of their punishment would be lifelong remorse and crushing guilt. The case mentioned where the parents locked 'Ebony' in a room to die in filth obviously had no remorse, no compassion. It was all just to hard. There is a deffinite difference between the cases. I don't think anything can justify homicide but if you've ever seen what seemingly endless misery and a sense of hopeless abandonment can do to good honest people its incredibly difficult to invisage justifying how locking these people up comes close to triaging societies darker sadder recesses. It's a very sorry state of affair.
    Alert moderator
    • Kate:

      03 Sep 2013 1:39:29pm
      I feel the need to raise something you and others have highlighted:
      "I personally think the human condition is pre-conditioned to think irrationally and act in self interest when dragged down beyond their tether"

      Since when is self interest irrational? Society demands these parents give up their entire lives 24/7 to care for a person who is unresponsive and not going to get better. There is no reward, there is no relief, there is no when they grow up...
      Looking at that from a coldly rational/irrational perspective the choice to care for a profoundly disabled person IS irrational for those that choose it. Good on them for doing so, but don't pretend it's a choice that makes 'sense'.
      Alert moderator
      • Tom Martyr:

        03 Sep 2013 5:35:42pm
        Those that choose it? those that do are very strong souls indeed who make a choice to do a tough job out of love but we're talking about carers here. Parents rarely get a choice and if they had one they probably wouldn't choose to have a highly disabled child for both theirs and the childs benefit.

        If self interest involves euthanising your disabled child one might argue that you'd have to be out of your rational mind. Me for example.

        The lines you quote are just my opinion but generally acting in self interest can take you to a place where you find yourself doing something you never thought you'd do and becoming someone you never thought you could. Those people who rationally thought they'd give heroin or pokies a go for a bit of fun and would never have thought theyd become junkies or destitute thieves began as rational adults and at some point a stronger force overtook rational decision making. When perfectly rational people are broken down suffiently they do some truly extraordinary things. Sometimes heroic and sometimes tragically sad. It comes down to that whole 'walk a mile in their shoes' argument again and whether that could ever begin to justify euthanising a beloved but seriously miserable family member.
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  • kenc:

    03 Sep 2013 12:01:56pm
    An important distinction that the original article and the comments both largely ignore is between taking something into account as a mitigating circumstance in sentencing and taking it into account as a reason for not laying charges in the first place. Broadly speaking I think parents who kill their disabled children should be charged with an appropriate offence, and I also think that if they are found guilty it should be open to judges to take into account all relevant circumstances in sentencing. The question then becomes whether it should be open to judges to treat the massive stress such parents may be under as a relevant mitigating circumstance. I think it should, and that such an approach would not imply any discrimination against disabled people, because the same approach is rightly followed in relation to other kinds of murder or manslaughter and other criminal offences. Of course, judges can give too much weight to such factors - but if they do, their judgements can be appealed within the legal system or condemned in the court of public opinion.
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  • Sandy:

    03 Sep 2013 12:21:07pm
    How does life really work? Sooner or later all individuals of all species of life die, but the process of life continues from one generation to the next. If individuals had intrinsic value, they would be immortal, but the reality is that only the process of life is immortal. Individuals serve that process and then die. Although individuals are essential for life to perpetuate itself, their value is instrumental only.

    What about people who are so severely disabled (from birth, accident, or old age) that they cannot in any way help sustain the Life Process? First, we need to recognize that their stake in the future is the same as ours. Despite their disability, their DNA and ours is virtually identical even if their disability is caused by a genetic mutation. We now know that only a few base pairs out of six billion in our DNA need to be out of sequence to create a heritable disease. So, we all have a basic, shared self that is potentially immortal.

    What if I can?t or can no longer contribute to the continuance of the Life Process? What if I am clearly more trouble than I?m worth? As an individual my fate is inevitable death, so why should I undermine our potentially immortal Shared Self by using resources that could contribute to developing healthier, better-educated children and a sustainable society?

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    • Tom Martyr:

      03 Sep 2013 1:35:26pm
      Choice, and all it's inheritant fallible justifications or condemnations.

      Case in point, Steven Hawking
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  • wombat:

    03 Sep 2013 1:10:29pm
    The article and comments raise some interesting questions.
    If someone is so disabled that they cannot communicate in any way how can we know their opinion about what's best for them? This is particularly the case when they are so disabled that, even if they were able to communicate, they are unable to formulate any thought about anything. All we can do is imagine if we would want to be kept alive under those circumstances. What would most people say about this? I don't know but perhaps they would say that they wouldn't want to be kept alive. It's not that someone who is severely mentally disabled, does not deserve life, it's that prolonging someone's life in those circumstances is just one of the options and not necessarily the best one. Non-disabled and disabled people who are competent make these sorts of decisions all the time. If, as a society, we don't fund adequate care and support for parents in a situation which all find difficult and many find intolerable, then it is unjust to imprison them when they kill their child. It may actually serve no purpose whatsoever. What evidence does Ms Young offer that a prison sentence acts as a deterent? I also think it is unjust to demand that parents must look after their disabled child and keep them alive for as long as possible. So to prevent these tragedies from happening we can consider:
    1. Adequate support for parents, who choose to look after their child, including income support to at least the level of average weekly earnings to show that we actually value what they are doing and honour their sacrifice.
    2. Or absolve parents of responsibility for the care of their child, if they so choose. The child then is looked after in an institution. If they get sick with something should they or shouldn't they have treatment?
    3. Or involuntary euthanasia.
    If we won't provide option 1 then we must provide options 2. or 3.
    Choose wisely.
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  • ck:

    03 Sep 2013 2:12:37pm
    As the mother of a wonderful girl who is diagnosed as being on the autism spectrum, my heart shrinks in horror whenever I hear about the murder of children with disabilities, and particularly autism, by their parents or others who should have been looking after them. I could not bear to watch the news in NSW when they were covering the case of "Ebony", the 7 year old girl with autism who was starved to death by her parents: a life sentence would be appropriate for them. It still brings tears to my eyes. The value of "Ebony"'s life was the same as that of any other 7 year old Australian.
    As for who should decide who lives and who dies: even the euthanasia movement argues that only the person themselves can decide.
    My 84-year-old mother has severe dementia. She is well looked after in a dementia-specific nursing home, as she deserves to be. While such full-time care should be (and isn't) available for people with severe disabilities, the lack of such care doesn't excuse murder. There have been cases where parents of severely disabled people, under extreme pressure, basically abandoned their (often adult) children at respite care centres, in desperation. I have some understanding of such a desperate action taken by often ageing, unwell parents. I have no understanding of murder. There can be no excuses.
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  • struck dumb:

    03 Sep 2013 2:57:32pm
    This article assumes that all parents should be loving. This is simply not the case, as people are individuals with different strengths and weaknesses. Caring for someone with a disability is very hard, and some of us are better at it than others. Living in a society that obligates us to be loving carers but does not provide much support makes things worse, as expectations among the people around the carer expect the carer to be a saint and martyr. Its not always possible. Throw in an imposed guilt for not being a saint and martyr, and you have a situation that is potentially explosive.
    Stella is far more fortunate than many people with disabilities. She has the ability to communicate intelligently, so her understanding of the Puhle case is possibly no better than anyone else's. Unless we have walked in the shoes of either Mr or Mrs Puhle we have no idea of how strength-sapping and mind-numbing it is to care for a helpless individual, a giant-sized baby. Mrs Puhle did not have the strength to carry on. It doesn't excuse what happened or make it right, and she will have to live with the consequences of her actions. But how many of us, including Stella, would have made a better job of caring for Karen? It takes a very special person to be able to do that, and be able to overcome the depression and frustrations of parenting a child who will never grow up, but still has adult needs and urges.
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  • OUB :

    03 Sep 2013 3:19:02pm
    I was helping out a colleague a couple of years back. Took a call from one of her clients. Could hear the kids vocalising in the background, as young kids do. I think they were both crying but they could have been just yelling and mucking about. Made some lighthearted remark and was then told they were teens or young adults, confined to bed in nappies.

    The parents are full time carers. Asian. I think some Asians carry a gene that can result in their kids being severely disabled if they marry another person carrying the same gene. They had a disabled child and then, I guess with the idea lightning wouldn't strike twice and that the second could help with the first when they were old and incapable, they had another child similarly devastated (no lightning involved).

    The parents are loving, genuinely nice people. In their turn they have, stressed, contemplated suicide. They have pulled back from that fortunately. They do not know how their kids will be cared for when they die.

    That is where the bad decisions come from. Desperate people, stressed by circumstance and lack of sleep, unable to think of alternatives. You want to punish them for bad decisions? I doubt that they will care. Life has done its worst.
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  • Felix:

    03 Sep 2013 5:48:32pm
    A very biased story by a narrow minded person. Clearly there are "disabilities" and there are "disabilities" and "quality of life" is an issue here as well. If it's not -well it certainly should be.
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  • Beverly:

    03 Sep 2013 6:47:44pm
    The subject Stella has raised is only part of the wider story of caring for those who cannot care for themselves. Not just children but adults and parents.

    Stella raises the horror of starvation but for our aged there are adults neglected and even murdered as well. People who were once lively and contributing members of society, now lying in a bed slowly starving to death because no longer can they absorb food properly.

    For some it may be because of cancer, others from alzheimers taking weeks and months to die as mere skeletons, their minds no longer alert. Where is the care for them especially those still at home? The home care available is so stretched so as to be almost useless for these high care cases.

    In principle I reject euthanasia but having watched friends and family members struggle with their love becoming duty, as they become depressed and isolated, I question how else to resolve these problems. Is murder better than suicide when it is all too much?
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  • Pingu:

    03 Sep 2013 8:23:43pm
    What about asking the person with the disability? Did they want to be born, did they want to be kept alive? So many children with severe and complex disabilities are being kept alive (who knows whether with their consent?), by modern medical practices. As an able-bodied person, I have the capacity to kill myself whenever I want (it's OK - I don't want - never have); but what "rights" does a disabled person have to enact that same decision? Stella makes some pretty unsubstantiated assumptions in this article; how about some balance by discussing what rights children/people with a disability have if they would prefer to die?
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  • Michael:

    03 Sep 2013 9:01:35pm
    Many years ago in NSW there used to be numerous psychiatric hospitals where persons with disabilities and mental illnesses could live or could go when needed. A man called Richmond wrote a report calling for the hospitals to be closed and the patients to live in community homes mixed in with the general public. The hospitals were closed and very few if any community homes were built. The disabled and mentally ill often ended up with their elderly parents who could barely cope. Millions and millions of dollars was saved by the wonderful Wran Labor government at the time. No government in NSW Labor or Liberal to their shame has since put the necessary resources in mental health or disability services. I am not making excuses for those who have killed someone but one can only wonder for instance in the case of the Puhle family what stress, emotional, physical and or financial they suffered to feel the need to starve their own daughter to death and for Harry Puhle then to kill himself. Having seen first hand the stress caused to families by the closure of the psychiatric hospitals. Being forced to care for someone whom they couldn't or barely could I can only be surprised that so few have murdered their child as a last desperate resort. If only all those psychiatric hospitals had not been closed in NSW I can say from my observations life would have been far better for families and those who are disabled and or mentally ill. At least they had a bed to sleep in, food and care some on a permanent basis and some on a part time basis when needed.
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  • Perturbed:

    03 Sep 2013 10:31:01pm
    The writer is correct to be alarmed at what is happening. The rise of an (unacknowledged) strain of Nietzschean atheism, coupled with our dominant libertarian economic ideals is going to completely change how society views those people who have disabilities. Most alarming, is the fact that these changes are being most radically (if unwittingly) pushed along by progressives who wear their heart on their sleeves, notably the Greens.
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    • June Just:

      04 Sep 2013 7:58:55am
      Written by someone who knows nothing but has great faith in their own stupid opinions.
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  • JD:

    04 Sep 2013 4:38:06am
    Stella

    While I have often expressed limited or no support for your position because of your tendency to over-state or understate the realities, it is also appropriate to express support where it is appropriate.

    On this matter, I could not agree with you more but that agreement is independent of the disability issue/link itself. In our society, the pre-meditated taking of another's life is murder ... pure and simple. In this case, starvation necessarily meets the pre-meditated nature of the crime and knowledge of the result of starvations and acknowledgement of that as the intent of the act starvation clearly makes it pre-meditated murder. Those are the fact and that is the only conclusion that can be reached on a logical basis ... read that, until lawyers, judges and special interest groups get involved.

    I am sadly reminded of the case of little Kiesha who's mother actually plead guilty to murder ... agreeing, at least, that she intended to take Kiesha's life. That being said, the judge, after accepting the plea and in giving his final ruling and sentencing stated that the mother's "failings are mirrored in the failings of others and that he did not think that while there was "serious injury" to Kiesha, "there was insufficient evidence to find that she had intended to kill her" and that "The offence was not premeditated ... but a spontaneous act of violence and anger."

    How could this happen. How could Justice Ian Harrison legally accept a plea of murder (intention taking of a life) and then immediately refute the definition of what Kiesha's mother plead guilty to by saying there was there was "insufficient evidence to find that she had intended to kill her"? Does the judiciary really think the public are 'barking mad'?

    So, in the case you are referring to, similar issue exist that, as I said, have nothing to do with disability. The mother took an action ... to starve her daughter. She also knew that if her actions persisted, the result would be death. So how, in the name of anyone, is that not murder. I mean, if we still charge individuals with murder in what is otherwise know as 'assisted suicide', where the 'victim' has simply asked for assistance to carry out their own will, why when no assistance to has been asked for by the victim and worse, when a request is incapable of being asked for by the victim ... how is that not murder.

    Anyway, disability or no disability, young or old, etc., pre-meditated murder is pre-meditated murder and murder is murder. While the legal profession, and I use the term profession with great scepticism, may disagree, stupid and illogical reasoning such as that of the justice in Keisha's case do absolutely nothing for bringing justice to victims of crime nor do they give credibility to the judicial processes within Australia. Sad as it is, they simply give comfort to those who are actually c
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  • HG2:

    04 Sep 2013 6:55:39am
    There was NO excuse for the mother to starve daughter to death and she should have 20 yrs.+ jail time for pre-meditated murder.

    She would have known she could take the child to a hospital waiting room leave her, then ring anonymously to say she can't cope and is leaving child to them. Or even a shopping centre and leave her.
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  • June Just:

    04 Sep 2013 7:56:07am
    The parents obviously cared for their daughter for many years before they just gave up with tragic consequences. I doubt there was an intent to murder and the charge reflected that. I can understand withdrawing into the family as for a family with a disabled child who is also an adult the limited services on offer are almost always by well meaning people who intrude without providing support. The pressures on parents to access services are rarely understood as they so often just expect that a parent provides emotional and physical support to the service providers - although there are no internal resources to do so.
    Stella can have no idea of the despair that builds from limited lives and the constant burden of having to provide for every need for someone else day after day and year after year. It leaves the carer with no internal resources and just a constant exhaustion and unhappiness. There is the knowledge that while there are plenty of people saying I don't know how you do it, there are plenty of others saying You should do it better. The support systems in place which require the carer to navigate multiple systems and thousands of people while feeling like walking through treacle add to feelings of despair that things will never get better and that there is no hope.
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  • bindi:

    04 Sep 2013 8:49:17am
    When parents of these children become so distraught that they actually allow their children to die isn't that then a disability. Mental health is often not considered and it is understandable why these people "snap". As parents' age the physical needs of the disabled person become much harder for them their confidence must surely wane. We think their is a lack of love but I would think the opposite. I do not condone the killing but if society puts expectations and makes laws then it must take responsibility for these.
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